Float Like a Buttahfly
— Kerry Wong

A graphic depicting a butterfly winding through the sky.

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”

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We need to keep sharing our stories and reject the ‘sickfluencer’ narrative

I am not a “sickfluencer.” Having a chronic illness or disability is not “cool” or “a lifestyle trend.” Of course, some sick and disabled people are, in fact, quite cool and trendy (as are, believe it or not, some healthy and able-bodied people!). But it is not the disease that…

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Critical conversations: Why talking about our medications is essential

Last month, I had two intravenous immunoglobulin (IVIG) infusions and three other medical appointments. This month, I have “only” one infusion and two appointments because I’ll be away for a few weeks. When I come back — another short month — I’ll have two infusions and five appointments. And so…

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Reflecting with gratitude on what sarcoidosis has brought to my life

At the start of a virtual meeting the other day, the facilitator began the discussion by asking all of us, “What are you grateful for?” Answers varied, but most included family, community, and health. I agree with those first two, but I have a harder time saying “thank you” to…

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How music can help us process chronic pain, and even provide some relief

Since the deaths of Dolly Parton and Tim Curry last week, social media has been flooded with moving tributes. “Jolene,” “9 to 5,” and “The Rocky Horror Picture Show” soundtrack stay with us for their cultural and emotional impact. Due to the music, lyrics, and nostalgia, classics like these endure…

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In an inaccessible world, sometimes you can’t make lemonade

When life gives you lemons, you make lemonade, or so they say. That metaphor doesn’t work quite as well for me, though, because I don’t like lemonade. Still, I agree with the sentiment and try to make the best of things whenever I can. But sometimes you just can’t stomach…

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Sharing the painful truth can comfort chronic illness patients

Like most girls growing up in the 1980s, I had a massive crush on Michael J. Fox. I watched all of his shows and movies (many times) and hung his picture on my bedroom wall. When he started writing books, I had to read those, too. These days, I admire…

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When living with sarcoidosis, it helps to be ‘Simply More’

My mom visited me at the hospital during my latest infusion and, unsurprisingly, did not come empty-handed. She brought lunch and a few tchotchkes she’d picked up recently. Among them was a decal that read, “And one day, the girl with the books became the woman writing them.” It made…

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After unrelenting health setbacks, frankly, I’m sick of being sick

I am sick of being sick. Tired of being tired. Sick and tired of being sick and tired. That’s a fairly common sentiment among people living with chronic illness, since “chronic” means it never seems to go away. I’ve been living with sarcoidosis, rheumatoid arthritis, fibromyalgia, and more for…

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When pain prevents progress, pursue purpose with passion

For the past few days, or weeks — or is it months? — it feels like I’ve been hurting more and more. It’s easy to lose track of time when one day lost to pain blends into the next. It’s difficult for me to explain, so I can only imagine…

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When chronic illness life feels overwhelming, seek joy and support

When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…


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